• 12 replies
  • 22 subscribers

I am on the waiting list to have a meningioma removed. Does anyone know whether I will have to be awake for the surgery?

  • I have a grade there Astrocytoma. Had mine operated on in January. I was given the option of awake or sleep. So you should have been given the option I’d have thought. Mine was so I could have my hand fired by electrical signals asleep. Or move my hands awake. Your head either way won’t all. And you will not feel a thing. So please don’t worry and ask. I woke up after surgery and was a proper groggy but ok. Ask anything

  • Thanks, the trouble is you see all of these hospital shows on TV and they have to make it so dramatic! I'm really scared of being awake for it.

  • All this will be discussed when you see your consultant. Don’t panic x. It’s all your choice at the end of the day. Mine was leave it and watch, have a biopsy or remove as much as. I didn’t see the point of the first and the second was going to be in my head any way. So I chose door no3. Try not to worry ( it’s natural ) but they will explain everything and ask your opinion x

    i had to edit as half of it made no sense sorry

  • HI Buggirl

    a warm welcome to the online community.

    Your fears are totally natural but please talk them over with your surgical team nearer the time. They will explain all the options that suit your situation best and put your fears to rest.

    My husband had an awake craniotomy when he had his stage 4 tumour debulked in Sept 2020. Although its classed as "awake" he was put to sleep while they opened him up then "wakened" for the debulking part of the procedure so that they could check his responses before cutting. A few days before we had met with the speech and language therapist who would be in theatre with him. She had asked a series of questions and noted his responses/response times. When they "wakened" him, she asked the questions again. If the response was worse, her role was to advise the surgeon not to cut there. They test it before making any moves. Once that part of the op was over, he was allowed to sleep again while they closed him up. 

    He was home 48 hrs later.

    Hope that helps ease the fears a little.

    This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now I'm sending you a huge virtual hug and lots of positive energy.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you 

    I tried to ask questions at my last appointment,  but they wouldn't discuss it. Apparently I have to wait for a different appointment for that.

  • I can understand how frustrating that feels. In the meantime, write all your questions, fears/concerns down and take those notes to that next appointment.  They can act as a "script" and help make sure you don't forget to ask something that's important to you.

    Stay strong

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Good morning

    I had a different tumour - oligodendroglioma so cannot comment whether awake surgery would be a choice for you.

    At my initial consultation with a team of neurosurgeons I was offered asleep craniotomy in a couple of days, because time was critical. So I didn’t have much time to think about it apart that I needed surgery so needed to get on with it. The following day I found out who the surgeon was going to be and googled him and found that his ‘preferred way of working’ was awake craniotomy but still didn’t give it much more thought. The evening before my op I was admitted and I met the consultant, and his team, for the first time. He asked me then if I would consider awake craniotomy but with less than twelve hours to go I couldn’t make that decision and they absolutely respected that and didn’t push it.

    The surgery the following day had to be abandoned because of a problem with my heart and general anaesthetic and rebooked for a couple of days later.

    This gave me time to think. I am and always have been a person who will listen to those who know and consider the options - not just be dismissive. It was also a way of finding a bit of the old me that had gone for a while. Anyway, so when he came to check on me the night before my op, I asked if it was too late to change my mind. My rationale was that if he could get better results with his preferred way of working and it would mean having to have less general anaesthetic then I was happy to trust him and his team. And I’m so glad I did. He saved my life. They managed to remove 100% of the tumour, I have completed 33 days of radiotherapy and just started second cycle of chemo. MRI scan this week, my first one since surgery, shows all is looking good.

    The awake surgery was fine - I found it quite interesting, not traumatic at all.  My neck fell a tad uncomfortable and it was very tiring. I didn’t find the experience dramatic at all, in fact the team were so calm and kind it instilled confidence in me. Went home after 5 days. This all started six months ago.

    I hope my ramblings help.

    Good luck

  • Thank you so much for sharing your experience. You make a good point. Good luck with the rest of your journey.

  • Not sure but I have now had 2 awake surgeries for a grade 4 gbm, first one was ok but the 2nd I had seizures while on the operating theatre but I don’t remember anything from the surgery which is good in some ways, the first time they debunked 90% and 2nd time 95% but got close so had more after effects, the first was In September 2022 and 2nd in April 2023, had chemo and radiotherapy in January 2023 but didn’t work so started a few months ago on a different chemo and targeted therapy which was hard to manage at first but handling it ok now and on cycle 4 now

  • The worse part was the screw holes in your head afterwards but they have healed now and just have and indent in my head, the head scar has healed well though